Ain't life a b..tch

[hanmorhan]

Hi everyone. I joined the site a few weeks back, but this is my first post. I've been reading some of the posts on pain and meds, so I thought I'd give you all a brief history, to see if anyone else has my problems.

About 12 years ago, I was diagnosed with Lichen Slerosus - a skin infection around my private parts. I was told that its not curable, only treatable. 2 or 3 days really sore (enough to make me cry when having a wee), then a couple of days of peace. Then the merry-go-round starts again! Fast forward to April last year, and my LS became a Vulval Squamos Carcinoma.(so rare, that the average GP would be doing well to see one case throughout their whole career). Very aggressive! Grew too much in 5 weeks to take surgery out of the picture. Intensive radiotherapy (6 weeks x 5 days) plus 5 x 6 hours chemotherapy, which left me in hospital for a fortnight (this was brought about by 12+ hours of raging diarrhea -every time I stood up, everything left me. It took my poor son 4 days to clean my bungalow!) with Pneumonia, Sepsis, and 3rd degree burns - front to back, inside and out. It took 4.1/2 months to eventually clear the blisters away, nurses in every day for the first 3 months treating and dressing the blisters. Ladies, have you ever tried to keep dressings in place, down there??? January this year, I found another suspicious "lump", which turned out to be a tag of skin with a haemorrhoid in it.Then in April, I found a 2nd tumour, which was surgically removed - within a week, over the Easter weekend! When I next saw my consultant, he told me I was cancer-free. Since the radiotherapy, my skin is so fragile, that I dare not "wipe", because it causes the skin to break and bleed. When I asked how long the skin was going to be so fragile, I was told "for the rest of my life". I am only 64! At this moment in time, I have a severe infection, which is almost as painful as the burns were. I have my next appointment on Monday, and I am dreading being told that this also will keep coming back.

Apart from this, I also have osteoarthritis in every single joint, and degenerative discs, as a result of back problem since I first slipped a disc at 19. Now, because of all the problems I've described above, sitting and walking has been extremely difficult, and consequently has upset my back even more. I have been housebound for most of the last 3 years, only going out with a wheelchair, when my son could take me. I have just recently bought a mobility scooter, and the freedom is wonderful!! although still very painful. I can pop up and down to town, or the doctor's, or even just a ride around the neighbourhood, as and when I want. So now, instead of going out maybe once a month, I go maybe 3 times a week, weather permitting.

A couple of other things that might interest you all. I had a hysterectomy when I was 27, and looked after my mother every day for 22 years (arthritis, wheelchair,confusion etc.) until she died just before her 90th birthday. At the same time, I also took on my grandson (from 10.1/2 to 16, when he went back home to his mother) with ADHD. And at various times, held down a p/t job as well. Haven't had a holiday for 17 years.

WHAT A RICH AND VARIED LIFE I'VE LED!!! (can't see me making it to 90 though.)

I would be very interested to hear from anyone that has/is suffering from any or all of the above.

[Hidden]

Hi Hanmoran, I am new to this site and was reading a few letters. I can only sympathise with your ailments but we do have something in common. I too had an hysterectomy at 27. I also looked after my mother for years till she died aged 94. I seem to have been in pain ever since. It's a good job we can't see into the future. I wish you well.

[hanmorhan in reply to Hidden]

Hi everyone. I Thought I'd update you all, since my visit to the consultant. They (I saw 2 of them) can't tell me how long this infection will take to clear up, or whether it will keep coming back, or even if its cancerous. He did take some swabs which will take a few weeks to get any answers. He told me not to take any more antibiotics, because they're not doing any good. Between the 2 consultants, I have been advised to increase my morphine again (I have been slowly reducing it over the past few months.) and the next step seems to be a permanent catheter, to keep all urine away from this area altogether, and then possibly a visit to the plastic surgeons to see if they can do anything about strengthening the skin. My consultant has promised to write to me, when he gets any swab results back, and wants to see me again in six weeks, instead of the usual three months. I assume that the catheter and the plastic surgery will depend on what those results are. And in the meantime, we play the waiting game!!